Understanding Autism: History, Myths and Facts

History of Autism

• Leo Kanner (1894-1981) identified inborn disturbances of affective contact and a powerful desire for sameness as key characteristics of autism.
• The 20th-century view of autism was as a rare and severe neurodevelopmental disorder mainly affecting males.
• Autism was once defined by intellectual disability, delayed language development, and distinctiveness from both normal development and other disorders.

Autism Myths

• Autism is not rare; it affects 1-2% of children and adults.
• The majority (50-70%) of autistic individuals have a normal IQ and fluent language skills.
• Autism is not solely defined by difficulties; it also encompasses strengths such as open-mindedness, pattern detection, expertise, and attention to detail.
• Autism is not a categorical condition, distinguishing it from other disorders and typical development.

New Consensus on Autism

• Autism is a common neurodevelopmental condition.
• Autistic individuals often have IQs in the normal range.
• Autism is a natural variation of human neurodiversity.
• Autism presents both challenges and strengths.
• The neuro-affirmative term for people with autism is "autistic".
• The term neurodiversity/neurodivergent is used when including people with autism.

NICE Guidelines for Diagnosing Autism (Under 19s)

• Gather detailed information about concerns from family/the individual.
• Consider the young person's experiences at home, school, and in social situations.
• Review developmental history.
• Conduct assessments (e.g., ADOS) to check against ICD/DSM-5 criteria.
• Perform a physical assessment.
• Identify strengths and skills, moving away from a deficit-based perspective.

Prevalence of Autism

• Global prevalence of autism is increasing.
• Approximately 1 in 100 people are autistic.
• Overall increase in autism diagnoses is observed.
• The increase in prevalence is due to increased community awareness, public health response, progress in case identification, increased community capacity, impact of COVID lockdowns, and less stigma.

Diagnosis and Mental Health Problems

• Later diagnosis (after age 8) is associated with a greater likelihood of comorbid mental health problems.
• Late-diagnosed autistic children often have high levels of mental health and social difficulties prior to diagnosis, which become more severe in adolescence.
• Services need to prioritize early detection and diagnosis of autism.
• Long waiting times (2-3 years) for diagnosis can lead to later diagnoses.

Camouflaging

• Camouflaging can lead to later diagnosis and poorer mental health outcomes.
• In adults, camouflaging is linked to higher suicidality, generalized anxiety, depression, and social anxiety.
• Results regarding camouflaging are inconsistent.
• Camouflaging is evident in both autistic and neurotypical individuals.
• There are sex differences in motivations for and consequences of camouflaging in males and females.
• Neurotypical individuals camouflage to fit in, make friends, and be perceived positively.
• Autistic individuals camouflage to avoid negative experiences and make/keep friends.
• Males find camouflaging easy and feel positive afterward.
• Females find camouflaging difficult and feel negative/drained afterward.
• Autistic males are least likely to feel inauthentic when camouflaging.
• Autistic females camouflage to avoid negative perceptions.

Mental Health Prevalence

• There is increased evidence of psychiatric engagement, hospitalization, suicidality, and self-harm for autistic children.
• The number of autistic individuals seeking support is increasing due to COVID, increased awareness, and less stigma.

Comorbidity

• ADHD comorbidity is 28%.
• "AuDHD" refers to the comorbidity of autism and ADHD.
• Anxiety comorbidity is 20%.
• Depressive disorders comorbidity is 11%.
• Bipolar disorder comorbidity is 5%.

Anxiety in Autistic Individuals

• 40% of autistic children meet the criteria for at least one DSM anxiety disorder.
• 30-40% demonstrate subclinical anxiety levels.
• Anxiety impacts the ability to do enjoyable activities, interact with friends, classroom performance, parents' ability to attend activities/events, and parents' careers.

Depression in Autistic Individuals

• 11% of individuals who meet criteria for autism also meet criteria for depression.
• Depression is hard to diagnose due to overlap with autistic characteristics (social burnout), alexithymia (difficulty identifying feelings), and abstract language difficulties.

BIMS (Burnout, Inertia, Meltdowns, Shutdowns)

• Burnout refers to feeling exhausted.
• Inertia refers to feeling stuck.
• Meltdowns refer to feeling out of control.
• Shutdowns refer to feeling frozen.
• Autism x Environment = Outcome

Eating Disorders in Autistic Individuals

• High rates of eating disorders are observed in autistic children and young people.
• This may be due to not experiencing hunger in the same way (interoceptive differences), more difficulties regulating emotions (too anxious to eat), social anxiety around eating with others, and rigidity of routines.
• ARFID (Avoidant/Restrictive Food Intake Disorder) is common in autistic individuals.
• ARFID has appeared in DSM-5.
• ARFID involves a severely restricted diet in both variety and volume.
• It results in a persistent failure to meet appropriate nutritional and/or energy needs.
• ARFID relates to autism through sensory sensitivities, fear of change/difference, and fear of contamination/choking.

Pathological Demand Avoidance (PDA)

• Pathological Demand Avoidance is a concept appearing in clinical work.
• Alternative terms include extreme demand avoidance and pervasive drive for autonomy.
• PDA was first described in 2003, and a measure was created in 2014.
• It is potentially related to anxiety/low self-esteem/need for control.
• There is not enough research on PDA.

Gender Identity/Gender Dysphoria

• Higher rates of autistic children presenting to gender identity clinics are observed.
• This may stem from a general feeling of not belonging in a neurotypical world, social difficulties, and biological differences.

NICE Guidelines - Support & Management

• Autistic individuals should have full access to health and social care services.
• Staff should receive training in autism awareness.
• Reasonable adjustments should be made to accommodate autistic individuals.
• Psychosocial interventions can increase carer sensitivity to communication and interaction and expand the child’s communication and interactive play.

Adapted CBT

• In adapted CBT, emphasize emotion recognition.
• Use visual information and worksheets.
• Emphasize Parent/carer involvement in sessions.
• Schedule regular breaks.
• Incorporate special interests.

Behavior That Challenges

• Conduct a holistic assessment.
• Then provide : Psychosocial intervention, Pharmacological intervention , Family assessment, Life skills, and Support for transition to adult services.
• Interventions that should NOT be used: Neurofeedback, Auditory integration training, omega 3-fatty-acids.